Brody is being weaned from the last of the muscle relaxant and that should be done by morning. He is very weak. As happy as we are to see him awake and smiling, it is tough to watch. Our little toddler was so strong and active just one month ago and now he is not able to sit up or support his own head. The nurses tell us that kids are so resiliant and make progress really fast. He has barely made any sounds since the tube came out. They said he will be hoarse for a few days, but I am starting to wonder if there was any damage. He did well the last two days with Popsicles and juice, so they tried some milk tonight and we can give him a cracker tonight if he is awake, otherwise I think we can try some food tomorrow when the cafeteria is open again. He continues to make good progress, so Mom needs to be patient now and he will get there. I have a little anxiety about what comes next as far as bringing him home, what type of transition will be needed, etc. I plan to ask about that tomorrow. He will likely be coming home on oxygen and still weaning from the drugs. I'm most concerned that he doesn't get sick again, but what can anybody do about that?

More pictures

Wed pics

Mommy and daddy love me

Great news!!

Good morning everyone!!! What a glorious morning it is!! Brody no longer has to be intubated, this vent is history!! We are so happy and excited for our little guy. Thank you all for your prayers. Thank you Father for keeping Brody, this precious miracle, embraced in your protective and healing arms. Brody is sleeping now. Drs are going to give him an hour to adjust and then there should be more pics for ya'll.

The plan is to extubate Brody tomorrow morning! We are very excited for this huge step in his recovery. We have been warned that the withdrawal process is going to be difficult to watch. We have already had a small taste of it. He has cried a few times now and we can tell he is emotional. Otherwise, not much is happening today. He is asleep and awake throughout the day.

Look at my new toy!!

He has been holding this syringe all day. He wanted to hold on to his tube so they gave him the syringe instead so he wouldn't pull his tube out.

Sunday

We are pretty excited that, as of now, it is looking like Brody will be off the breathing tube without the traech! This is just an estimate, but it seems they might be able to pull the tube out Tuesday. He has been slowly weaned down from the narcotics and is now being sedated and pain controlled by five drugs. The wean from those will take longer, and we were told to plan another couple of weeks here. Once the breathing tube is out he will be moved to a step down unit down the hall. Still in the ICU but this is where he will withdraw from the drugs. My 2 year old is going to detox! Then, depending on how everything is at that time he could possibly be moved to one of the other floors. We aren't sure what this all means for going home, but we know he will be on oxygen again for sure.

This one is from Matthew and when Brody gets better Matthew is going to teach Brody about transformers.   The long one is from everybody at Carlynn's. They love Brody and someday when he is 3 we will have a sleepover. Here are other get well cards from London, Natalie, the Eisenschenks, Gaets, Avery and Christopher, and from Aiden. Thank you all so much for sending him these wishes. He will love them when he gets better.

Well, those of you who followed Brody in the NICU are well aware of his infamous blowouts. The one today didn't qualify as a blowout, the nurse said it was an oil spill. His new boots were ruined after only one day. The orthotic guy was just here this morning to make adjustments to them and now he gets to start over. Good news is, Brody has now cleared all the old crud from his GI bleed. It was pooled up to his shoulders and they had to change his IV line dressings and everything. The best part of it was he did it while Mom and Grandma were out to lunch! Lol.

They started Methadone and Adavant to wean him from the narcotics, Morphine and Versed. They will be trying 1hour on C-pap this afternoon to see how he does with breathing on his own. If that is successful they will try another 1 hour tonight. He still has a slight fever, but nothing has grownin the cultures yet. He is sleeping peacefully now with the Adavant on board.

My new boots!

Here are my new boots. I cried at first because I didn't want them on. But I only need to wear them for a half hour at a time until my feet stretch out again. We are working our way up to 2 hours on and 2 hours off. Big sissy says "Too bad they aren't cowboy boots. Would have looked better."

Good morning everyone!!

Brody is doing pretty well again today. He still has the fever of around 100.5 and his CRP went up (C Reactive Protein indicates your body is fighting some sort of infection). He was started on the antibiotic Vancomycin and his blood was sent down for culture which could take 24 hours for results. They are lowering his ventilator rate from 18 to 14. He is off the schedule for surgery tomorrow . If he can begin to take some breaths on his own this week, hopefully by the weekend they can start some sprints on C-Pap. Basically what that does is allow him to breathe on his own for periods of time to build up his stamina before they pull the, tube. They are concerned about his stamina after being intubated for so long plus weakened by illness. He has lost a lot of weight. Depending on how things go, he may still need the traech early next week but they want to allow him to try. He is showing us he wants to try.

Brody is still making progress today. The ventilator was turned down again, with the plan of allowing Brody to take some breaths on his own. This is a slow process because he has been intubated for so long he is not used to it. It is huge exercise for him to take a breath right now. He started running a fever late yesterday, somewhat of a concern. So far, it is controlled by Tylenol and ice packs. His urinalysis tested negative for infection, so hopefully it is nothing and it will go away soon. He is very awake today. They increased his morphine so he can hopefully sleep his fever away.

Monday

Brody had a good day again today.  He is completely off the nitric oxide and the ROCoronium (muscle relaxer).  He is now being kept sedated and pain controlled by Versed (like Valium) and Morphine.  They started feeding him 3mL per hour (very little) through a tube that was inserted during his surgery past his stomach, past the ulcer, and into the intestines.

The long term ventilation option I spoke about in an earlier post involves putting a traecheostomy in. Last week on Friday, the doctors thought it was necessary and scheduled him for Tuesday (tomorrow).  That is now postponed due to how much progress Brody has made this weekend.  We are tentatively scheduled for Thursday, but the next 24 hours will tell.  The purpose of the traech is to prevent damage to the vocal cords from the air tube being in his throat too long.  They do not want kids intubated for more than 1 month.  Brody has been intubed for almost 3 weeks now, so if the traech happens, it will be soon.  We are not too excited about it, but we've come to terms with it.  Whatever Brody needs, we are okay with.  But they started talking about it when Brody was on high ventilator support and had low oxygen saturations.  Now, Brody has high oxygen saturations, lower vent settings, and is weaning off the sedation.  The two big things that will make the traech unnecessary is if Brody can start breathing on his own (after the sedation is weaned enough he will start breathing more than what the vent is doing for him) and if he does not have any setbacks during this process that might prolong the amount of time he will need the ventilator.

Brody has periods of wakefulness, he is opening his eyes, and he recognizes our voices and faces.

 

Brody's nitric oxide is turned down to 3.5.  They will be very slow on weening him this last bit of nitric.  They cut his muscle relaxer, Rocaronium, in half.  He has been awake today, opening his eyes and interacting with us.  He is still very sedated, but he is moving a little bit.  He can't move his head yet because they tube needs to stay still, but at least he is moving a little bit.  We have been seeing quite a bit of tears today.  Good thing he won't remember it, but we feel bad for him.  The surgeons removed the dressing on his tummy incision today and that is doing fine.  They capped his OG tube, the tube that was draining the bile from his tummy.  Instead of draining the bile out, they want to see it go through his system.  If his tummy doesn't grow between today and tomorrow, they will start feeding him.  If his tummy gets bigger, it means he isn't ready to start moving anything through there yet.  We hope he can start eating tomorrow because Brody is starting to be skin and bones.  He is on 50% oxygen, a PEEP of 5, and a PIP of 24 and a rate of 20.  That is probably Greek to most people, but they have turned down his ventilator support.  We are heading in the right direction.

Brody continued to do very well today. His oxygen saturations stayed in the 90's and his blood gases were good.  They weaned the nitric a little and the vent settings a little, but they don't want to push him too hard in this state so they are going to leave the settings alone for the night.  They might start feeding him tomorrow.  The day doctor is keeping him moving along, so I speculate he will continue to wean the vent tomorrow.  Brody continued to be interactive today and we saw a few tears from him.  The nurse speculates it is emotion, not pain, due to the timing of us talking to him and then seeing the tears. But she says that he will not remember it.  I wish they would roll up a bed for me so I can sleep next to him and hold his hand, but I can keep wishing on that one.  There are too many needs to get at him from both sides, so I would be in the way.  But it would be nice.  When he gets the tube out, I am going to hold him forever.

Today has been a very good day. I spent quite a bit of time last night praying for a miracle and we know that many prayer groups are doing so as well. We thank you for that. Brody's oxygen saturations are up and the ventilator support has been turned down a little. The doctor is pleased with his progress today and we hope that he can keep it up. Due to his good oxygen saturations, they have been able to wean down the muscle relaxers a little and he is now grasping our hands and opening his eyes a little. Even though he only opens his eyes to little slits, we know he is in there hearing us. I raised my eyebrows at him and he raised his back. I can tell it is a lot of work for him, so I'm trying not to do it too much. But even a slight interaction today is a huge deal for us. He's been so heavily sedated that we haven't "seen" him for a long time. So we hope and pray that they can continue to wean the vent settings over the weekend and show all these doctors that Brody Bear can do it!

 

Good news on today's tests. They revealed nothing different than they already knew, which is that he has bad lungs from being a preemie. That, combined with the virus, has taken its toll on his lungs. That is why he is not oxygenating his blood like he should be. There are areas of over-inflation, areas of under-inflation, and areas of scarring. There is no pulmonary embolism or problems with the blood flow to the heart; they were able to rule out the "other" possible causes of Brody's problems that they were concerned about. Although that was good news, it was a tough day. His oxygen saturations continued to be too low all day. The bleak news is that they expect this to be a very long recovery with possible long-term ventilation which could turn into home nursing care. I will share more as I know more about it, but I don't want to jump too far ahead into the possibilities right now. We just really need for Brody to start oxygenating his blood in the next few days. Brody is very "stuck" right now and really needs positive progress. There are risks to leaving him on the ventilator for too long, and in about a week there will be a concern about leaving him on the vent much longer; so he really needs to get better.

No news yet from radiology. Dr. said he was going down to look at the scans with the radiologist, so we hope to have some information soon. Otherwise, Brody is doing about the same.

Brody is getting 60% oxygen support, but his saturations are low. There were 2 periods of time, last night and this morning, when his saturations just stayed at around 75%. So, he is going on a road trip (through the tunnel) to Abbott to get some imaging done. He will get a bubble study where they put dyed bubbles down his breathing tube and watch where the air is going through his heart and lungs. They will also do a head-to-toe CT scan. Mainly they are looking for any pulmonary embolisms that might be preventing him from getting better. They are doing head-to-toe as long as they are doing a scan so they could uncover whatever is going on. This will happen at noon. It will be quite the production to bring Brody's bed, IV tree, ventilator, nitric, and of yeah, the baby! The doctor and nurse and respiratory therapist will go. It will be a parade.

Thursday Afternoon

The bronchoscopy went well this morning. One of his air ways was completely plugged with mucus, so they were able to clear that. The area on the right side that is showing up white on the x-rays had a bunch of gunk in it too, and they were able to clear that out well. He is still recovering from it; his oxygen saturations are still low. He is currently getting 80% O2 support with saturations in the low 80s. Otherwise, nothing new to report.

Got My Blog Back!

We went to Geek Squad and got access back to my blog so I can finally post pictures again! We are beyond grateful to our family, friends, and co-workers for the cards, gifts, and pictures. Kids, please keep those pictures coming; Brody is going to love them when he wakes up. Happy Valentine's Day! Brody is having some trouble now with fluid settling in his upper right lobe. They put the Nitric back on last night and he is still saturating in the low 80's with 70% O2 support. They are going to do another bronchoscopy this morning to try to help him move the secretions. Since an intubated kid can not cough it out, it settles in and doesn't move. They are continuing to do the metaneb (the air pulses to help loosen up the crud from the inside) and nebulizers every four hours. Brody's progress is stuck right now, and it is very concerning to all of us. The Dr. says we just need to take it day by day and hope he makes it through this. They will continue to provide oxygen support and try to deliver it to the tissues. He is not expending the oxygen right now, by running or moving around, so he can survive with the low saturations. Currently, he is getting enough oxygen to his tissues and they monitor that closely with the blood gases. He just needs to get better!!! Now!!! This picture is from just after the ECMO cannula was pulled. As you can see, they didn't have time to make a small or pretty incision. His tummy was inflated like a balloon and they had to get in there. The doctor and nurse are looking at the cannula they just pulled out, while the doctor is holding pressure. The nurse took over and held pressure for about 40 minutes. The surgery team was in this morning and said that, from a tummy standpoint, he is doing great. His issue now is his lungs again.

The preliminary lab results showed no organisms, but 4+ white blood cells, indicating some type of infection. It takes about 3 days to get anything more from the culture, as it grows in the incubator. We really hope it is just the old stuff finally coming out. Brody doesn't need anything more to deal with right now. Our normal night nurse is here with us for a little while but he is needed on another floor. We aren't sure who is taking over, but he said "I'm sure they will put a strong nurse in here; Brody is not little league". That's so true. If you are Brody's nurse you just don't know what you're gonna get. Beth and Nik came down this evening and brought us a huge surprise from my co-workers at Creative Memories. Thank you so much. We can't thank you enough. Really.

Brody is doing well today. They were able to give him a "bath" today and clean up the messiness on his face and neck from the bleed. His lungs are sounding crackly today and they were able to get some crud out from suctioning. It might be that the old stuff is finally coming out, or it might be something new. So they sent it down to be cultured in the lab and meanwhile they are giving him 3 antibiotics in case it is something new. They are doing a technique on him 6 times per day. Instead if pounding on his chest to loosen everything up, they hook him up to a machine that sends pulsating air into his lungs to sort of pound his chest from the inside. Very interesting what they have here. We received many cards, letters, and gifts yesterday and today. Thank you! Brody and we are very lucky people. Love from Minneapolis.

More pictures of Brody

I got to have some bath time!! Too bad I couldn't play with any toys. I'll just have to make up for lost time when I go home with mommy and daddy.

Post-surgery pics

So far, so good. The cannula is out and the nurse will hold pressure for about 40 minutes. Then she will put on a pressure bandage and he will be kept very still for the rest of the day.

They are pulling the cannula right now!

The ECMO cannula will come out later this morning. His stomach looks good and the stuff coming out of the tube is now as it is supposed to be (not bloody). The lungs seem good and he is still getting 55% oxygen support.

Brody's oxygen needs are down to 55%. He has been resting very comfortably and is still completely sedated. He hasn't had any bloody stools yet, which they prepared us for more of. Yesterday was very critical. He was rushed to surgery because he was bleeding out. They found an ulcer that they were able to stitch up and thank God it was the only bleeding site. That was a huge concern going in to surgery that they might get in there and find a worse situation. But they previously found the bleed using an upper GI scope. I will spare you the details, but he was bleeding from everywhere. We praise the Lord for allowing Brody to stay here with us. As far as what happens next, if he does well tonight they will remove the ECMO cannula tomorrow morning. He will be intubated for the foreseeable future, at least several mote days. Theywill not start his feedings back up for a few more days until his intestines have more time to heal. I would like to post a picture but I'm not ure if you want to see. His tape still has blood on it and his incision is pretty big. Maybe I'll wait until they change the tape. One of the doctors said chicks dig scars, so he'll get a prom date for sure. I love these people!

Brody had a good night. He is resting now and not bleeding anymore. They are going to try to leave the ECMO cannula in for one more day in case he needs it again. His oxygen support is at 75% and they would like to see it lower. They think he still might swell a little but so far his pressure readings are good. He won't be fed for a few days other than IV nutrition. We are so grateful for all the prayers and to God for sparing our son. The people at Children's Hospital are so good at what they do.

Brody is back in his room in the PICU. He is super sedated and not feeling a thing. They removed the ECMO prior to surgery and so far he is doing okay without it. The cannula is still in, just in case he needs to be hooked up again. Tonight, he will likely have some swelling which they will monitor closely. On rare occasions they need to go back in and relieve pressure but it is rare and they hope it won't be Brody's case. He will continue to have bloody stools for a few days while all the residual blood comes out. At least we will know that it is not new blood and we will be expecting to see it. I've seen enough blood coming out of my child today to last a lifetime.

Brody is out of surgery and stable. We haven't seen him yet. They are still cleaning him up. They were able to stitch up the ulcer. He is still very critical, but he is alive. We'll keep you posted.

Still in surgery. No word yet.

The Gastroenterologist put a scope down Brody and found the source of his internal bleeding. He is going into surgery. Please pray very hard for Brody.

The stomach bleeding has not subsided and is now coming out of his mouth. So they stopped the heparin and turned up his ventilator hoping to turn down thee ECMO. They had to turn the ECMO back up last night to where he started. His tummy is distended due to the bleeding which is pushing up on the lungs and not letting them work as well. So they called a stomach specialist who might put a scope down to see what is going on in his stomach. The concern at tis point is getting him off ECMO as soon as possible, although he still appears to need it. So, here we are. In the middle of the seige.

Brody started bleeding again from his stomach so they changed to a bigger tube because the blood was coagulating and not coming out of the tube. They reduced his heparin again, the drug they are giving to thin his blood. That is what they did to stop the bleeding before, but the risk of not having enough blood thinner is clotting in his ECMO tubes. The doctor was in and was willing to accept some bleeding in order to not turn down the heparin too much that they start seeing clots. He said the problem at this point is pesky but not of great concern. They are giving him more blood to replace what he is losing. He has started twitching, but he is at the maximum amount of pain medicine and muscle relaxers, so they were letting him twitch for a while. The doctor authorized a little more morphine. We are confused now because the day crew seemed to think he was weaning from ECMO but the doctor that just came on said he was on the same level of support as he was last night and he would not be weaned for another several days. We will seek clarification on this in the morning. Please pray for Brody's cousin who came to this hospital today, also with RSV.

Dr. Mac was in. The xrays look better and he sounds great; a lot less crackly. Dr. Mac was optimistic that they could try turning the ECMO support down and see how Brody's lungs do. Nurse said they would first wean the ECMO and see how he does with lower ventilator support. I don't know what that means for how much longer he might be on ECMO, but when the doctor and nurses are excited, I'm excited too.

No news. Brody continues to rest and the nurses continue to closely monitor him. Anyone who faints at the sight of blood would not do well here. We hope for a quiet weekend of healing with no problems.

Brody got another bronch procedure this morning to try to clean out the upper right lobe. There wasn't a whole lot secretions sucked out, although we thought so. Dr. Mac wanted to see big plugs come out, but he got a bunch of little junk. He probably will let Brody rest from the bronchoscopies over the weekend. On the secretions they got out yesterday, they found evidence of aspiration, which they suspected from the xray. The dark spots of collapse look better on the xray this morning and there are still white areas. The white areas usually indicate mucus but they aren't finding any when they go in.

Brody had a good night. He received blood products (platelets, etc) to bring his numbers back up on his labs. They just took an xray , so I am curious to know if his lungs got any better over the past day. He is still bleeding slightly from his stomach, but they don't seem overly worried. They are watching it closely. His tummy is distended but they've been measuring and it has not become any bigger over night. We are now on day 2 of ECMO and praying.

Samples from Brody's lungs tested positive for RSV, the dreaded virus that everyone hoped he would not get. That is why he has been getting the shots on a monthly basis. We were told the shots would not prevent RSV but would help it to not become as serious. Yeah. The doctors are glad to have figured out the cause, although the treatment would not have been any different. Since it is viral, it needs to run its course while the hospital supports him through it. The worry was why he was so sick with no apparent reason. Not knowing what they were dealing with, it was difficult to speculate when or if he would recover. Brody's "nose bleeds" turned out to be deceiving. The bleeding was actually from somewhere in his stomach and it was so backed up it started draining from his nose. Once they identified where it was coming from, they inserted a tube with suction to get it out. It was dark and old, so the doctor said they were not concerned that he was actively bleeding. Although, the blood has been seeping out all day in little amounts. As long as we are on the subject, he also had a clot at the end of his foley catheter so they had to switch that out and his pee looked like koolaid all day. Sorry if this is too much information, but people want to know. :-) And I need to stay busy. I just want to give an extra thanks out to my coworkers who gave us a very nice surprise today. We are very appreciative. Well, we can give thanks to God that Brody is resting and somewhat stable now. Mostly we thank the good lord he is still here with us. Damn RSV.

Send me, mommy and daddy some support and love!!

Brody is at 2525 Chicago Avenue South, Room 5443, Minneapolis MN 55404. We welcome mail, visitors are restricted due to cold and flu season so only parents and grandparents can come see Brody. His blood pressure is low right now so they are giving him some medicine to bring it back up. They just weaned him 20min ago from the medicine they were giving him to lower it and now they need to go the other way. Welcome back to the roller coaster, Brody! We thought we were done with the NICU roller coaster but now I guess we've decided to ride the PICU one.

Pictures of Brody

Hi Ya'll! This is Big Sissy Chelsea here! Jenny asked me to help with the blog so she sent me these pictures to upload. Let me tell you these break my heart. I have many down here in Texas praying for my precious little brother. I'll keep ya'll updated as I am updated.

Brody is doing okay on ECMO. His labs and vitals are excellent and they were able to wean the nitric down to almost nothing. He should be completely off that today. He has had two nose bleeds which are horrible but common. They are waiting for that to settle down a bit and then Dr. Mac is going to bronch him again. He said Brody is way more stable on the ECMO so he can really go in and wash his lungs out. The X-ray looks the same as yesterday. He has two areas of collapsed lung. There are six lobes and two are collasped. They told us to think about the fact that he has compromised lungs to begin with, then he gets pneumonia and maybe a virus. Now he has two areas collapse, taking a third of his functioning lung capacity. In my words, not the doctor, this pretty much leaves up up the creek without a paddle.

ECMO

Brody is now hooked up to the ECMO machine and stable. There is an ECMO specialist in his room at all times as well as his nurse. His blood is tested every hour to ensure the proper consistency. They want it thin, so it does not clot up in the tubing, yet thick enough so he doesn't bleed. There are so many risks with ECMO that I can't think too much about it.  I just need to trust that this is the best and only option to heal our son. The nurses are extremely optimistic and supportive. Brody can be expected to be on this for a couple of weeks. I am waiting to wake up from this nightmare, but it is real. I can't explain how much this hurts, so let's just say it hurts a really lot.

Brody is being placed on ECMO, the lung bypass machine. It is the best option to let his lungs heal. His oxygen saturations were hanging in the mid 80s with 100% oxygen support. They can't give more than 100% oxygen, so there is really nothing more they can do besides ECMO. The alternative would be to keep him on the ventilator and cause more damage to his lungs. He is being prepped for surgery now and we are just staying by his side on the darkest day of our lives.

not good

The doctors are once again talking about ECMO. The pulmonologist is going to try putting a camera down in his lungs and see if he can suck out any mucus plugs he finds that might be blocking his lung function. There are two areas of collapse that they are thinking are the good areas of lung that he has been depending on thus far but are now blocked. They are concerned about his ability to tolerate the procedure so the plan is to do it in ten minutes or less. The doctor has been doing this for 30 years and is pretty fast. They are putting in a line into his hip area in preparation for ECMO. If he doesn't tolerate the procedure things will move fast. I've signed the papers authorizing them to do whatever is necessary to save him.

Wednesday

Brody had a rocky night. He is now being provided 95% oxygen and his saturation is around 85%. His hemoglobin is a little low so I am signing a consent for a blood transfusion today. They added a muscle relaxer so that perhaps they won't need to give him so much narcotic. They have temporarily paused his feedings so he can focus on oxygenating. They have upped his iv fluids.

Tuesday night

Brody took a step back while I was at dinner tonight. He started breathing real shallow and his oxygen was desaturating so they called in the doctor. They turned up the vent and put the nitric back on. They think he might not be tolerating the wean from the nitric. They drew a blood gas a few minutes ago and we are waiting for the results. Also they may do an extra chest xray but they wanted to see what the nitric did first. He is currently saturating in the mid to high 80s,. His oxygen support was back at 100% but he is now at 75% with extra breaths and pressure. He wasn't getting the volume of breaths he needs.

Tuesday

I had a very informative meeting with the Pulmonologist, Dr. McNamara. He explained to me that Brody has a prime example of what they are calling the new BPD. Bronchio Pulmonary Displaysia is the term for the chronic lung disease that premature babies deal with. The doctors have learned all the ins and outs of BPD from 27-32 weekers. Until recently, they were unable to save the younger kids. So, as they have been able to save the younger kids and they are now seeing them develop, they are seeing a new form of BPD. In the old BPD, kids had enough time to develop their aveolia, or air sacs, and had surfactant in utero. The damage in these kids occurred from being on ventilators. With the micro-preemies, aged younger than 26 weeks, the alveolar development is not started yet and occurs outside the womb. As a result, instead of normal grape-like clusters of air sacs, Brody has large open white spaces, or undeveloped aveoli. There is a whole lot more to it, but basically he has no reserves. He will develop new lung tissue until he is three, so it should get better, but he will probably have more problems. The doctor was not surprised that he got this sick. He was more impressed that he was as well as he was for as long as he was. Kind of sobering information, but it explains more about why his body didn't handle the infection. And also, it explains why he is in a holding pattern. We were hoping to be out of here sooner rather than later,but Dr. McNamara said we aren't getting out of here any time soon. He said to plan for a seige. At least another couple of weeks.

Tuesday

No progress on the vent settings. His oxygen need went up slightly from 60% to 65%. They plan to wean the nitric today

Monday

Brody is doing some more resting. Not much to report now. He just needs to rest and heal. He has been opening his eyes now and then. Last night he reached out both hands like he wanted me to pick him up. A couple of times he has pointed at the door. If he didn't have the tube in I know he would be saying "go" when pointing.

Ugh. Trying to do this on my phone really stinks. I was trying to finish the last post but the phone keeps moving the cursor all over the place. I was trying to say the doctors said the xrays don't always show the whole picture of what is going on inside the body. We asked what we can do to prevent aspiration in the future, like is there anything they can do to suck it back out or get him started on antibiotics right away? He said no, that this really was a fluke thing and the circumstances we all there; I.e. bad lungs, illness, aspiration. We are supposed to be taking him back to speech therapy for eating, and we plan to see about a swallow study because he does seem to choke on his juice quite a bit and he isn't chewing up his fgood like he should be. We got a referral for that at the NICU follow up clinic the week before all this happened.

Still Getting Better

Hello. Brody has continued to improve very slowly. He made progress on the ventilator settings but is expected to be on life support for a few more days. The pulmonologist expected he would be off the vent by Wednesday and, like when he was in the NICU, will go through a period of withdrawal from the sedation medications. He will likely be in ICU for a couple of days after the tube comes out. As far as getting out of the hospital, we don't know. The doctor said we can expect it to be a month before he is up and running around like his normal self. Our Brody is such a wiggle butt, though, that we don't think it is going to be that long. He is already periodically waking up and looking around. They are going to start using as little medicine as possible in an attempt to make it less of a withdrawal when the tube comes out. That means they are allowing him to wiggle around, but will give him extra sedation if he tries to wiggle his tube out. He lifts up his head and tries to turn it and that is a no-no when you have a tube down your throat. The doctors have settled on a cause. They think he aspirated when he vomited, causing the pneumonia. And whatever infection was there was now in his lungs due to the aspiration and that is what caused it to get to the level that it did. His lung xrays still look the same, two main spots of infection, one on each side. They are a bit baffled by the fact thatwhen they consider the amount of support Brody is requiring and did require throughout this, they expect to see a horrible lung xray. In his case, the lungs look relatively good. That is why they always

Relief

The pulmonologist was in and said he is very pleased with the progress Brody has made. He has turned the corner and we expect he will still be intubated for a few more days to recover further. This was a crazy, crazy ride but things are looking up. There still is no known cause, but it is speculated that maybe his lungs weren't in as good of shape as we thought, or maybe when he threw up he aspirated into his lungs and got pneumonia. There was no known bacteria or virus, at least from what they can see in his lab work.

better

Brody's oxygen needs overnight dropped. He was formerly in need of 100% oxygen through the vent and now it is only giving him 40%. This is good. Very good. Room air is 21%. The respiratory therapist just tried a different setting and is moving it back now. But that's oka y. We can take one step at a time. She did turn down the pressure from 28 to 22.

Brody is about the same. We are encouraged that it is not getting worse. His blood gas at 3:00 was the best since he has been here, but dipped again on his 6:00 draw. We saw his highest oxygen saturation yet at 97% for about 30 seconds! Otherwise he is hanging between 86% and 91%. He is getting 100% oxygen in his vent with a PEEP of 12. That is high for his size. We were able to get a room at the Ronald McDonald house. This hospital has one on the 3rd floor which is amazing. Brody has opened his eyes a few times as his sedation wears off. Within a couple seconds he gets mote medicine, but he knows we are here and we talk to him and hold his hand.

Brody's condition has become worse since we got to Minneapolis. His o2 sats have dropped, so they tried hooking him up to nitric oxide. It is not laughing gas, which is Nitris oxide. Nitric oxide goes into the lung with the oxygen and gets down deeper into the lungs. If it is going to work, it immediately starts increasing the o2 sats. In Brody's case, it did not make a difference. His lungs sound clear and that is the frustrating part. There are clearly areas of the lung that are ciculating air and there are areas that aren't. There will be another chest xray this afternoon. Right now, the entire situation depends on time. He may get worse and he may get better. We do not know. If he starts getting worse, as in going downhill, things may happen fast and they will need to do the lung bypass machine. Or, he could slowly ride this thing out and recover. God only knows. We don't get to call the shots in this. I will be signing off for a while. The words lung failure were used today and that is breaking me.

update

the hospital firewall blocks my access to blogspot so i am trying this from my phone. this is not user friendly so it might be rough looking. brody is the same with the exception that his heart rate is down and oxygen is slightly up. we are so happy to be here at Childrens. they know exactly what to do for him. good news, the leak on his xray turned out to be an artifact so he does not have a leak. that would have gone real bad real fast. they are doing another echo to check heart function before moving on to lungs. they can send a camera down to look at the bronchial tubes and can collect samples from deep down in the lungs. they want to rule out a heart pumping problem first, though. The doctor explained the bypass technology but is fairly confident that Brody is nowhere near that point or heading there. They are testing for another virus that they haven't tested yet. There is no different treatment but if they can identify the cause they will better know what we are dealing with.